I've been feeling worse and worse. It's getting harder and harder to make it to work, even for 2 hours a day, which is making my financial future seem very scary. I'm spending a lot of time in bed, which makes me feel like a lazy bum, which is starting to affect my self-esteem, but I just don't feel up to moving until the late afternoon most days. I recently sent an e-mail to Dr. B at the Chiari Institute in New York to fill him in on my condition, hoping for some new answers.

January 26, 2008

Dear Dr. Bolognese,

I'm writing to fill you in on the progress of my condition since my cranio-cervical fusion in December 2003. It has been very difficult for me. I have been to pain clinics, massage therapists, I exercise regularly with a personal trainer, and I've tried numerous medications. Unfortunately, nothing has really helped with my ongoing symptoms. I have tried to give my body time to heal and repair, but it seems like it's been quite a long time since surgery. I've been diagnosed with chiari I malformation, cranio-cervical instability, retroflexed odontoid, POTS, IBS, EDS, and arthritis. The main symptoms that I think you should know about are listed below.

1. Headache: My baseline pain level is a 4, with a constant feeling of pressure in my head. At times, the pain worsens to a more debilitating headache. I become hypersensitive to light and sound, and I need to rest for quite a while to have any relief from the pain. It does not improve with massage therapy or pain medications.

2. Fatigue: I require 12 hours of nightly sleep plus frequent naps. I spend much of the day in bed, but I am often able to work a couple of hours in the afternoon. I have more energy at nighttime, if I've rested during the day, so that is when I exercise, if possible.Overall, I feel very lethargic.

3. Neck/back pain: I have regular neck pain, as well as frequent pain between my shoulder blades and in my lower back, always within the spinal region. My head often feels very heavy. I also have developed increasing mobility since my fusion to C-4. I have a fairly normal range of motion now. Is this normal/bad?It feels like my head is no longer being supported by the fusion. I also have severe muscle spasms and painful knots in my neck and shoulders that always return soon after my frequent massages.

4. POTS symptoms: I have frequent tachycardia and low blood pressure spells. I am not able to walk very far most of the time, despite treatment and regular exercise.

5. IBS symptoms: These have developed in the last couple of years. I have abdominal pain and bloating after eating as well as chronic constipation. These symptoms continue despite treatment and drastic restrictions on my diet.

I'm sorry for such a long list. I just want you to have all of the information that you need. I've done all I can think of to cope with my current symptoms, but they continue to be unbearable. Included is the disc with the MRI’s and x-rays you ordered.My neurologist, Dr. Rowena Adajar has sent her evaluation to your office.Please contact me with any ideas you have that may improve my quality of life.Thank you.

In addition to the symptoms I thought to include in the e-mail, other symptoms have worsened or returned, including the nausea and choking. I also have the strangest sensation that my head is no longer sitting on my spine the right way. I just feels off. And it is no longer in the position it was originally placed in during surgery. I can tell, because my hard collar that was fitted to me post-surgery no longer fits.

It's very hard to cope lately, because I'm starting to feel again like I'm getting worse and no one has any answers. It's also hard when I have lost so many friends, due to being home-bound or bed-bound most of the time. I spend my waking hours teaching piano or working out at the gym. I often feel like people are tired of hearing about my condition, and since I'm so used to be sick, they don't really believe that it is as severe as it is. I guess it doesn't help that I try to act healthy, in a pathetic attempt to help people deal with me.

It's getting to the point where I can't remember what it's like to be healthy. I truly have no idea what it would feel like to be pain-free or to have real energy, not vicodin-induced energy. It's been 6 years since my first surgery, and I started getting sick during the 6 years before that. It's hard to think about how much of my life I've lost to this disease. I obvious still do my best to live a full life (most days), but it's just been such a long journey, and there's still no end in sight. And every time I've found a reason to hope, it's been lost.

I'm sorry for the pessimism. It's quite a journey for me, and I have to get these feelings out somewhere, after spending so much time pretending to be strong and hopeful.

Without those of you that help me in my daily life, I would never be strong enough to move forward. And without the love of everyone in my life, I would never have reason to keep trying. Thank you.